It's Monday. It's a very difficult Monday. I didn't really think I had over done it over the weekend but apparently I did. I tried my best to rest, sat when I could. Fell asleep before 10:30 and yesterday I spent the afternoon in bed.
And yet when I woke up this morning I wanted nothing more than to stay in bed. The problem. No sick time. I have used it all up and I am reluctant to use my vacation time for days off. But as I sit here at my desk I feel like I am going to loose it. I am going crazy. I would give my right arm to lay down, cry my eyes out, scream in pain. This really sucks. Tylenol is doing nothing and I can't take anything stronger at work... what a huge frustration.
I love my job, I love working and right now I can't afford not to work. Life is so frustrating and such a challenge. How do I manage to sit here for 8+ hours a day? I really need a vacation. Can I make it through this week... I don't know. I know today I will go home and spend the entire evening in bed, leaving my wonderful husband to cook and take care of my 9 year old.... but I really don't have a choice. I need something.. maybe a million dollars so I can take a few years off. :-). So today I will continue to sit at my desk, fight back the tears and pray that 4:00 comes much quicker than normal.
Monday, November 15, 2010
Wednesday, November 10, 2010
One of the Most Frustrating things about having Lupus
Let me just start this post by saying my Rhuemy & PCP are AMAZING. This post stems from issues with specialist.
The first most frusting things is when I am dismissed. In August I was really, really sick. I spent days in bed, a trip to the ER and trip after trip to the doctor for tests and IV fluids. Both my normal doctors were on vacation but I saw a new family doctor who didn't dismiss me, I was amazed. I know my body better than the average person. I know when I have a fever and I know when it's not Lupus. After a few weeks I went to a GI who did more tests and I learned that everything was "fine". So there it was "It's Lupus".
It is really frustrating. Now I am dealing with new symptoms. I am dizzy all the time, my core temptature has dropped to 94.5* and these headaches are INSANE. But it's Lupus.
The dizzyiness makes me so sick. walking down the hall is intersting, I sometimes wonder if people think I'm drunk. But of course it is blown off, I have Lupus therefore they can't help me, unless I want to take steriods and steriods don't work.
The core tempature thing is really interesting. I didn't know that it WAS lupus related. I had never heard of this side effect, but it really sucks. Frist of all I'm cold all the time! When I get home from work I usually take a burning shower just to warm my bones & joints up. then I crawl into bed under 5 or 6 blankets and a heating pad just to warm up. This is also an issue when I go to the doctors & they ask if I have had a fever. I know when I have a fever, if I'm "normal" they think nothing of it. to me 98.6* means I am clamy and sick. So if I am asked if I have had a fever I say "yes, but I don't know what it is because I don't take it, I just know when I have a fever". So now to find a cure for being cold, because nothing is more miserable than spending my day shivering or in so much pain from my cold, cold bones.
So I guess I just need to learn that most things are "just Lupus". But what if something isn't "Just Lupus"? what do I do then?
The first most frusting things is when I am dismissed. In August I was really, really sick. I spent days in bed, a trip to the ER and trip after trip to the doctor for tests and IV fluids. Both my normal doctors were on vacation but I saw a new family doctor who didn't dismiss me, I was amazed. I know my body better than the average person. I know when I have a fever and I know when it's not Lupus. After a few weeks I went to a GI who did more tests and I learned that everything was "fine". So there it was "It's Lupus".
It is really frustrating. Now I am dealing with new symptoms. I am dizzy all the time, my core temptature has dropped to 94.5* and these headaches are INSANE. But it's Lupus.
The dizzyiness makes me so sick. walking down the hall is intersting, I sometimes wonder if people think I'm drunk. But of course it is blown off, I have Lupus therefore they can't help me, unless I want to take steriods and steriods don't work.
The core tempature thing is really interesting. I didn't know that it WAS lupus related. I had never heard of this side effect, but it really sucks. Frist of all I'm cold all the time! When I get home from work I usually take a burning shower just to warm my bones & joints up. then I crawl into bed under 5 or 6 blankets and a heating pad just to warm up. This is also an issue when I go to the doctors & they ask if I have had a fever. I know when I have a fever, if I'm "normal" they think nothing of it. to me 98.6* means I am clamy and sick. So if I am asked if I have had a fever I say "yes, but I don't know what it is because I don't take it, I just know when I have a fever". So now to find a cure for being cold, because nothing is more miserable than spending my day shivering or in so much pain from my cold, cold bones.
So I guess I just need to learn that most things are "just Lupus". But what if something isn't "Just Lupus"? what do I do then?
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